Rationing-of-Care Debate Must Include Those Most at Risk
I will admit my bias. Officially, I am in the “at risk” population for severe complications from COVID-19. I am also in the population that could be triaged away from critical care if our hospitals break under the pandemic’s stress.
I live with cystic fibrosis, an inherited condition that my fills my lungs with thick, sticky mucus. That thick, sticky mucus is the perfect medium for infectious pathogens to call home. Respiratory infections lead to clinical decline in CF patients because they flare our symptoms – cough, shortness of breath, and oxygen dependence – and lead to permanent lung damage. I have, unfortunately, suffered through my fair share.
The rhetoric around rationing lifesaving care leaves me wondering what would happen to me if COVID-19 overruns our medical system.
Would my underlying respiratory condition be used against me in such a situation?
No physician wants to choose who lives and who dies in a single heart-wrenching moment, and, frankly, none should have to. Instead, government and hospital leaders are working to establish regional or statewide triage guidance for front-line care providers based on various patient attributes such as underlying health issues or expected “life years” remaining. This is a scary topic for people who may fall outside that guidance because of chronic conditions or advanced age. If we are not heard now, who will speak up for us when it is too late? Those of us who stand to lose the most must be given equity in the decision-making process that will ultimately result in triage guidelines for doctors.
The National Council on Disability suggests that setting triage recommendations based on pre-existing medical conditions may run counter to the Americans With Disabilities Act.
Ari Ne’eman, a disability rights activist and Harvard health policy doctoral student, also recently concluded, “People with disabilities have an equal right to society’s scarce resources, even in a time of crisis.” Mr. Ne’eman says a “first come, first serve” approach would be the best way to maintain equality. He does admit that that plan has its critics.
I concede that difficult choices may have to be made in the days ahead – resources and space are finite. If a nightmare scenario comes to fruition where demand for critical care and ventilators outweighs hospital capacity, it is important we listen to patients who could be pushed aside. Especially if the recommendations offered in a New England Journal of Medicine article inform the guidelines put into practice. They go so far as to say it is “justifiable” to remove a patient from a ventilator or ICU bed for the benefit of another patient.
I have fought tooth and nail against cystic fibrosis for close to 29 years. It should not be held against me under any circumstance. Instead, my extensive lived experience inside the health system should entitle me, and others living with chronic conditions, to representation in the conversations that could determine how our lives play out.
I fear, however, our world is already starting to overlook people living with chronic illnesses. Some bioethicists are calling for a triage system where “critically ill patients would be given a score from 1 to 8, the lower the score translating to a higher priority for critical care resources. Patients with things like advanced cancer, dementia or chronic lung disease would score more points and, therefore, be lower on a list for resources in short supply.”
Not so long ago I would have definitely been on the wrong side of such a system. Even today with relatively improved health, I am not sure I would be considered a priority given some of my underlying complications, such as the chronic bacterial infection in my lungs.
If our nation’s health system reaches its tipping point and is forced to triage patients based on underlying factors, we must be willing to listen to all stakeholders. It is essential that hospital and government policymakers include people living with life-altering health conditions and disabilities at the decision-making table. Our voices cannot be left out of the discussion that yields the triage and rationing guidance handed to front-line physicians – the people who must implement these unimaginable choices.